Reflections on MDM – Page 3

MDM in practice, Reflections on MDM, Views from the frontline of care

The Caregiver Corps – let’s do it!

Caregiver Corps: Tapping A Nation of Caring People

By Janice Lynch Schuster

I recently participated in a Twitterchat (#eldercarechat), where someone raised the question of what we want government to do to improve the lives of the nation’s 60 million family caregivers. Someone suggested creating a Peace Corps-like program to recruit new graduates to serve family caregivers. I immediately volunteered to launch a petition to do just this, and wrote one on the White House website, which encourages civic engagement.

My petition is very short. It seemed to me that in the context of trying to raise interest and garner signatures, I needed to be to the point (http://wh.gov/GURc). It reads:

We petition the Obama Administration to: Create a Caregiver Corps that would include debt forgiveness for college graduates to care for our elders.

More than 60 million Americans are family caregivers. They face challenges: Health suffers. Finances suffer. Families suffer. Aging Boomers will overwhelm our caregiving resources. Let’s create a Caregiver Corps, that would marry college debt forgiveness with programs that place recent graduates with families and aging services providers. Let’s bridge the generational divide that promotes ageism. Let’s do it!

One of my Twitter followers admonished me for my lack of detail. Without it, she said, no one would would take me seriously. The idea is in its early stages, and would require thoughtful analysis and number-crunching by experts. But in the meantime, here’s the general idea for it.

Why We Need a Caregiver Corps

Several demographic trends are creating a future that will leave families and our beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age–that is, living past 80–with multiple chronic conditions that will, no matter what they do, kill them. In any given year, some 60 million Americans serve as family caregivers to another adult, someone who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities, and face even more challenges in terms of education, employment, and so on.)

These families will run square into a medical system that is not prepared to care for them in the ways the need most. These individuals might sometimes need rescue and cure—but they will more often need long-term supports and services, and help with things like transportation, hygiene, and food. And while they’ll have plenty of access to ICUs and new hips and knees—they will be shocked and disheartened by the costs of all the things they will need to pay for on their own: private-duty nurses, for instance, and home care; transportation and food and skilled nursing care. Unless these families spend-down to become Medicaid beneficiaries or have adequate long-term care policies, their costs will be out of pocket. And those costs will be beyond reach for most middle-class Americans.

In the meantime, the social services agencies meant to serve aging Americans continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in the State of Maryland.

And there will be few people to provide the hands-on care that these adults will need. The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers. These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.

A Caregiver Corps: Hope—and Help–for Us All

What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. The program could recruit volunteers: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.

Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen their burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others.

While volunteers could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.

That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.

So, let’s try it. Let’s create a Caregiver Corps. Let’s get the Administration to think about it, and weigh in. It’s time, really, to move forward. We need 150 signatures to push the petition to the public pages of We the People. Please take a moment to add yours:

https://petitions.whitehouse.gov/petition/create-caregiver-corps-would-include-debt-forgiveness-college-graduates-care-our-elders/vZ5WhStx

Janice Lynch Schuster specializes in writing about aging, caregiving, and end of life issues, and is a co-author of an award-winning book on the topic, Handbook for Mortals: Guidance for People Facing Serious Illness (Oxford University Press, 2012).

Papers and presentations, Reflections on MDM

Short films about polypharmacy

Short films to discuss polypharmacy? Why not. The entries to the First Short Film Festival about Polypharmacy and Health are here. These are great, instructive, fun, reflective, and artistic. Which one is your favorite? Why? Simplifying treatments, drugectomies, physician-assisted noncompliance, medication therapeutic management – all of these reflect the need to reduce the burden of treatment imposed by complex, often unnecessary, and frequently unsafe medication programs.

MDM in practice, Reflections on MDM, Views from the frontline of care

Need for a Minimally Disruptive Medicine toolkit

By Nathan Shippee

MDM needs a toolkit for people who are interested. This is not my idea originally—I’m just a messenger. As a junior researcher fortunate enough to be involved in minimally disruptive medicine (MDM), I’ve been able to collaborate with and learn from great people like Victor Montori, Frances Mair, Carl May… the list goes on.

Yet, for all our efforts, MDM remains a good concept, but one with arguable impact. Our research has shown that treatment burden is a real and measureable thing; that managing chronic conditions is complicated and work-intensive; and that medicine needs to recognize the balance between the demands placed on a patient and his or her capacity to handle those demands (see the MDM blog’s Jan 9^th post for a bibliography). However, what have these realizations done for patients?

At Mayo (at least while I was there), there was mixed success (Victor mentioned this here). In trying to merge MDM into primary care, for instance, MDM-interested people were able to help some patients in simplifying medications, lab tests and diet, but also encountered barriers, such as problems in changing all the forms patients are asked to complete (especially when they visit multiple specialties at the clinic) or the way visits are scheduled to consolidate them and improve convenience.

We’ve been contacted by providers at other clinics who have read some of this work. Some have had interest in tools to measure the complications in patients’ lives; others have been interested in provoking culture change by educating their colleagues about the difficulties and challenges that patients face.

People at the core of MDM have discovered that it may be impossible to change how medicine is delivered at a given clinic or practice due to institutional inertia, difficulty in getting professionals to buy in, and so on.

Instead, there is a different idea: to provide a toolkit for people interested in MDM and its implementation, built upon existing evidence and collected findings, suggested scales and new measures, and more, in order to promote a broader impact for MDM on common practice and pm patients’ lives.

Therefore, here is a teaser for what might become a dominant theme in MDM: it is time to create an MDM toolkit—a clearinghouse, go-to place, or whatever one might call this single source for tools that help make MDM to be useable and to have an impact.

Initially, such tools might include:

background and literature developments supporting MDM, including bibliographies of recent papers (like the one on the MDM blog);
ways to build knowledge and motivate and culture change, such as presentation slides, conceptual model outlines, graphs, and other material to promote MDM concisely and directly;
shared decision making tools to improve the involvement of patients’ informed preferences in medical decisions; and
survey items or measurement approaches people can use to assess and track healthcare-related overburden and workload-capacity imbalances among patients. Later, based on widespread testing of these tools and focused intervention studies, we might add validated screening tools, field-tested and evidence-based components for building MDM interventions, and updates to our conceptual models and statistics about the solutions to patient overburden, healthcare-related disruption, and lack of support for patients.

This toolkit may sound ambitious, but it is reachable. Developing individual tools that can be picked up for free, piecemeal, and used in practices may be the most far-reaching, and yet also most feasible, approach to ensuring that the promise of MDM reaches its intended beneficiaries—patients.

We welcome your thoughts. What would you add or take out of the toolkit?

Reflections on MDM

The work of being a patient gets a bit more press

In a fascinating account, and writing for the Altarum Institute blog, Janice Lynch Schuster reveals her discovery of the work of being a patient and relates this to our conversation about minimally disruptive medicine. This is among the best written accounts of MDM available and I highly recommend it.

On a personal note and in response to Nathan Shippee’s comment to the article, she adds:

The approach makes so much sense to me–both personally, in my own experience, and more generally, when I think of what it means for people to live with multiple, long-term chronic conditions. I appreciate the point you make, about workload-capacity imbalances increasing over time and presenting even more hurdles for patients. I wonder how people can address these imbalances — or how their clinicians can help them to do so.

The call for action is there. So much to do.

Reflections on MDM, Views from the frontline of care

What is healthcare asking of caregivers? Too much!

We have discussed how caregivers share in providing capacity to patients with multiple chronic conditions. We have also discussed how blind usual care is to the role (and health) of caregivers. In this excellent interview in the Prepared Patient forum blog, Gail Hunt, president of the National Alliance for Caregiving, speaks of the demands placed on caregivers by the healthcare system, of some efforts to pay attention to this and improve outcomes. In minimally disruptive medicine, we need to match demands to capacity and in considering the capacity, we need to focus our attention on both patient and caregiver. This view from the caregiving community adds face validity to these efforts. Well worth the read.

MDM in practice, Reflections on MDM

A capacity consideration in goldilocks care: frailty

by Stephen Evans, MD (geriatrician, New York)*

A dilemma exists in implementing the role of Care Navigator, when that care management role includes translation of medical treatment choices for patients and their families; how is the Navigator to assist patients/families to understand when an intervention is more or less likely to cause overall benefit or harm, especially in the usual situation of multiple simultaneous co-morbidities?

Physicians know (or should know) that, as people age and accumulate disabilities, more aggressive interventions may be as likely to cause harm as benefit. We call this transitional time in patients one of increasing frailty, in which frailty is defined as vulnerability to adverse clinical outcomes; I wonder if taking frailty into account might make the Care Navigator’s job clearer in the Minimally Disruptive Medicine care model.

Several studies have shown that frailty in either of two constructs (the Hopkins/Fried Phenotype or the Rockwood/FI-CGA) predicts quite powerfully patients’ likely benefit or harm from interventions. It’s easiest to think of “vitality” or normal adult functioning as one end of a spectrum, with “frailty”, with decreasing functioning at the other end, and the challenge is to assist a patient/family to understand where the individual patient sits on that continuum of vitality-frailty; placing a patient on that spectrum makes it easier to consider the likely benefits/risks of treatment.

Our group uses the FI-CGA, which has a wider mathematical “spread”, allowing more nuanced measurement of a patient’s frailty in this way. We use the patient’s score to contextualize shared decision-making among patients/families and caregivers.

So, a patient who is “vital” (not frail, such as, for example, the 95-year-old still playing tennis regularly) has a much better chance of a successful outcome with a hip fracture repair than a frail 75-year-old with a history of stroke with dementia, depression, and physical disability. At the same time, no tool, including the FI-CGA, predicts which patients will do well or poorly at different levels of frailty or vitality, so we try never to say “you should” do one thing or the other. Rather, we outline the choices, the patient’s frailty, a ballpark sense of what the patient’s status could be with or without the intervention, and then try to help the patient/family determine which treatment choices they prefer given the attendant risks and benefits of treatment or non-treatment of acute or chronic illness.

Studies published recently suggest that frailty measurement may be the best way to assist geriatric patients/families and caregivers to understand their risks and benefits before embarking on treatment; frailty may assist Care Navigators in their management/translational roles as they apply the Minimally Disruptive Medicine care model to these patients in the future.

*Disclosure: Dr. Evans is founder of Videx-US, a company that offers clinical decision support software for elderly patients based on the Rockwood/FI-CGA to place patients in the vitality-frailty continuum.

MDM in practice, Reflections on MDM

Minimally Disruptive Medicine comes alive!

by Allison Verdoorn

Designer researcher, Mayo Clinic Center for Innovation

Meet Susan and John. They are an active retired couple who enjoys traveling and visiting their grandchildren. John has multiple chronic health conditions including diabetes, high blood pressure and arthritis. Susan serves as John’s primary care giver and manages his medications and health conditions. The amount of work they must do to deal with John’s medical conditions is in balance with their capacity to do that work and achieve their larger goals.

In the Minimally Disruptive Medicine care model, John is assigned a Care Navigator, Frank, because of his multiple chronic conditions. Frank works with Susan and John on a frequent basis both by phone and in person to address any issues John might have either socially or medically. Frank is especially interested in any goals the couple has like traveling and losing weight and takes care to make sure any care plan is in line with the goals. Frank has access to a database of social service connections and is a member of John’s health care team so he is able to relay relevant information back and forth from John and Susan to John’s care team.

John suffers a stroke that hospitalizes him.

In the traditional medical model, John is seen by multiple specialists, each with different plans of care, diets and medications. Often these visits take place when Susan is not able to be present and the couple is left to reconcile all of the information they were given when John is released from the hospital. While his capacity has been reduce by illness his workload has increased with new diets, medications and plans.

In the Minimally Disruptive Medicine model John is cared for by a care team that includes physicians, dietitians, pharmacists, social workers, nurses, a care manager and care navigator. This care team consults carefully with specialists to ensure that a cohesive plan of care that aligns with John’s goals and work capacity balance is developed.

A care manager, Lucy, works with Frank, the care navigator, to ensure that the clinical goals of the care team work with and not against John and Susan’s goals and desires. The care manager serves as a counterpart to the care navigator as a liaison to the clinical team.

John is released from the hospital.

In the traditional medical model, John is sent home with a confusing dismissal summary, multiple new medications, conflicting diet plans, and two different rehab programs. John and Susan are unsure who to contact for follow up questions and instead try to make due as best they can with the information they have. Both John and Susan’s work to care for John has been increased while John’s capacity has been greatly reduced due to his illness.

In the Minimally Disruptive Medicine model John and Susan leave the hospital with a care plan that was discussed with them before leaving. The care plan is sensitive to the goals John and Susan are striving towards and includes contact information for their care team. John and Susan can call Frank with questions and concerns and Frank provides them not only with clarification but also community resource connections. Frank reports information directly to Lucy who is able to relay updates to the care team on a regular basis. Frank pays special attention to the couple’s work capacity balance.

In the traditional medical model, John’s health continues to decline and the stress of the situation and caring for her spouse begins to affect Susan’s health. The work she must do for John is a huge burden for her.

Susan feels she is becoming depressed and is no longer able to function at the level she had before the hospitalization. Because of this Susan’s capacity to do the increased work is reduced.

As Susan falls into a depression her ability to care for John is reduced and John’s health declines further.

With few resources, John and Susan continue to manage their declining health on their own.

In the Minimally Disruptive Medicine care model the care team continues to meet regularly even after John’s release from the hospital.

Physicians, nurses, care managers, care navigators, pharmacists, social workers and dietitians work together to make sure the plan of care that is developed reduces the amount of work the couple must do and increases their capacity to do it.

When specialty consults are necessary, the team reaches out to the relevant specialist and then brings the recommendations back to the larger group to ensure they are inline with the larger plan.

The team utilizes a dashboard to allow for an accurate understanding of the John and Susan’s work and capacity levels.

In the traditional medical model, John’s capacity continues to decline as his conditions are not well managed. Additionally his work has not been reduce and has in fact increase now that Susan is struggling with problems of her own.

The traditional medical model has placed John and Susan in a seemingly never ending loop that continues to add work to their lives while providing no additional capacity. John will struggle to improve over time and will likely continue to have expensive hospitalizations.

In the Minimally Disruptive care model John and Susan’s work and capacity balance is carefully monitored by their care team.

The care team develops care plans that help the couple

MDM in practice, Reflections on MDM

The economic case for minimally disruptive medicine

A colleague just brought this piece by Gerard Anderson from Johns Hopkins published in US News and World Report Health section.

Mr. Anderson does a good job at focusing attention on the matter of patients with multiple chronic conditions, the focus of our attention in minimally disruptive medicine. He also makes the point that this problem affects the elderly, but only the elderly. This is in part due to the explosion of risk-defined diseases (diseases defined by committee) and the general deterioration in quality of life and well being in our populations. It is also summarizes well how unfit the healthcare system is at managing these patients. Indeed, we believe minimally disruptive medicine is one approach that the healthcare system can take on to begin to overcome its limitations. What justifies this effort? Mr Anderson summarizes it as follows:

People with five or more chronic conditions

Represent 22% of all Medicare beneficiaries and 69% of all Medicare spending

See an average of 13 physicians per year

Fill approximately 50 prescriptions

Are 99 times more likely to have a preventable hospitalization than someone without a chronic condition, and 98 percent of all hospital readmissions within 30 days occur in Medicare beneficiaries with five or more chronic conditions.

Can goldilocks care, care that fits the patient’s context (multicomorbidity, limited capacity to face the demands their care requires), and the patient goals be the solution?

It is our impression that many healthcare systems are ready to take on a change in their practice to accommodate this model of care. The financial models, the workforce training and readiness, and the technological underpinnings will take time and dollars to develop. But this is an innovation worth pursuing. And that is the road our team is treading.

MDM in practice, Reflections on MDM

Reducing the burden of treatment in patients with chronic conditions by enhancing capacity. A new tool

Our friends at Mayo Clinic’s Center for Innovation are working hard at developing assessments of capacity for patients. This is particularly important – and why they are working with our team – when we want to reduce the burden of treatment, the result of healthcare demands exceeding the capacity to access, use, and enact healthcare that affects overwhelmed patients with multiple chronic conditions.

In minimally disruptive medicine, the healthcare system should partner with patients, caregivers, and the community to manage the workload/capacity balance. One way that this balance can be restored is by reducing treatment burden, i.e., workload. Another one, is to enhance the capacity to face those demands. This requires support for patients and caregivers. Some of that support may come from enhancing community support.

The CFI team has developed these tools. What do you think? Could something like this be helpful as part of a ‘goldilocks’ dashboard?

MDM in practice, Reflections on MDM

Independence at Home Organizations as implementors of Goldilocks care?

The New York Times offers an OpEd written by Jack Resnick, a NYC solo internist. In this article, Dr, Resnick discusses delivering care at home and highlights the health and economic opportunities afforded by this practice, particularly among the elderly and highly disabled. Of course, these patient groups are often complex and have multiple comorbidities.

The opportunity afforded clinicians who assess patients at home is that of a highly detailed understanding of the context in which caregiving (including self-care) is taking place and on the ways care is being implemented.

A colleague working a few years back in the Peruvian jungle noted that pill blisters were accumulating around a religious icon sitting on a shelf. The patient felt that this was the way in which these medicines would be most conducive to improved her health.

Clinicians accessing patients at home also reduce access barriers to care and can make care delivery fit the context of these patients and their caregivers. By clinicians I mean not only physicians but also nurses, pharmacists, social workers, dietitians, coaches, and other healthcare workers.

As consultants and sales people know, travelling to make sure you have enough face-to-face contact is important to develop relationships and make fruitful connection. Chronic care delivery clinicians know the same thing. As both are finding out, tools to achieve that connection cannot replace the power of the personal visit, but certainly supplement it. To make models of home care affordable will require a combination of in-person and technology enabled contacts, with the former always administered in sufficient dose before shifting to the latter.

Healthcare reform in the US has provisions to support Independence at Home Organizations. Very little research into technologies to support home care delivery and in ways to support and enable the informal care network that is home-based exists. It would be critical when developing rules for these organizations that the burden they may impose on patients and caregivers be kept to a minimum by design, that they connect with communities to improve patient and caregiver capacity, and that they proceed efficiently in a patient-centered fashion.

That this connects with Minimally Disruptive Medicine is hinted by Dr. Resnick himself, the author of the OpEd. He states:

For too long the institutions that make up our health care system — hospitals, insurers and drug companies — have told us that “more is better”: more medicines, more specialists, more tests. To rein in spending and deliver better care, we must recognize that the primary mission of many an institution is its own survival and growth. We can’t rely on institutions to shrink themselves. We need to give that job to patients and their doctors, and move health care into the home, where it is safer and more effective.

Perhaps too much to ask of a single solution set, but perhaps not. For those who are home bound and for those for whom the current system fails them by overwhelming them, home delivered care may represent one more tool to deliver care that fits.